Thursday, December 1, 2011

During the entire month of November, I heard people expressing how much they were thankful for. Every day they posted what that day’s worth was. They described the usual: family, friends, and in some instances health or fractions of good health which is often the case for a lupus patient. I read each one of these acclamations and wondered, “Is everyone really internalizing these thoughts? Are they mere lists that one feels obligated to write?” Certainly it is a wonderful gesture, but what is the weight of its worth. This got me to thinking about accomplishing grateful endeavors. How can you be grateful for your life if you have no task in which to prove it? Or even better, what process have you gone through to try and accomplish a purpose?

Over the years, I have learned that words are often just words. I have also come to realize that to internalize a thought process means so much more. It is the difference between the “I wills” versus the “I haves”. Sometimes we do not reach our destined goals, yet the road that has led us there, if traveled diligently, has brought us to other destinations. It has landed us on the shores of our souls.

People often ask me how I am able to accomplish so much, and yet fight four autoimmune diseases. My first response has always been, because I am afraid. The thought of slowing down and stopping my world in its tracks scares me more than anything. In my mind, when that day comes, that’s when they should dig the hole.I respect the wolf. I take my meds and listen to my body. Yet at the same time, ignore what the wolf believes I can no longer do. With this stubbornness I am much better off. Being a visual person, I always see myself as looking over my shoulder, and when the wolf is not looking at me, I run like hell to my next destination. Once I get there I laugh at him. This too, I see visually as me holding my belly and pointing.Being able to visualize yourself as an individual who can accomplish many things is half the battle. Denial?...maybe. Stupidity?...sometimes. Rewarding?...always.

This is not a new way of thinking for me. Having Rheumatoid Arthritis since I was a child, I had learned early on that life isn’t always easy. I have always been a project person. It is through these projects I learned the art of distraction. When I was 8 years old I saved bird feathers for two years in hopes of one day making wings to fly. My mother was appalled when she found them in my closet stuffed in a box. I had my first “business” when I was in high school. I reproduced album covers on canvas with oil paint for a local “head shop.” By the time I was 21 and living overseas on an army base I painted tasteful nudes for GI’s.At the age of 25 I owned a photography restoration lab. This was before computers, when everything was done on the negative by hand. At the age of 33 I opened an art school. It is where my heart is today, eighteen years later. So when the wolf knocked at my door, I wasn’t about to bow down to him. It isn’t in my nature.

Seven years ago, before the wolf, I set out to give my daughter a graduation gift for her high school achievements. I could have given her the usual, a car or jewelry. But I was so proud of her; I wanted to give her my heart. On Thanksgiving weekend 2004, I started writing my memoir. She had not known the stories of my past. We did not have family to gather around a holiday table to relate them. In this way she was deprived. I wanted to give her the gift of my history and therefore hers as well. I finished the project with a 500 page chronicle of my life. I have led a very interesting life. I have traveled and lived abroad for several years. Alone in the world at a very young age I had experienced an epic existence of struggles and accomplishments, with often hilarious paths along the way. The point I was making for her is that you never grow up…one just keeps on growing, and it is the journey that counts more.It is ok to be fearful, stupid and make mistakes along the way, because life is an adventure and this is how you learn.After I completed this project, I felt it had done its job and set it aside. With the encouragement of some friends who had read it, this year I turned it into a novel. I added some characters and made it a complete story; soon it will be published. The process it took to complete this task was the most rewarding in my life thus far. The feeling it gave me, healed me. It was such a wonderful experience it drove me to want to tell everyone if you believe you can do something then you can, but arriving is not the goal. It was not the finished book that was my reward, but the journey on which it took me.

So I ask you? What can you do today that you didn’t think you could because of illness or adversity? It doesn’t have to be a great feat. Small accomplishments are equally rewarding. With ever little stride that is taken you will find larger steps to be easily obtained. Sometimes a daunting endeavor is actually a series of smaller obstacles that are effortlessly hurtled. With my book, I chose to just write one chapter at a time. Every completed chapter gave me strength. Although I felt the prize would be its completion, it in fact was its process that gave me the most reward. As in C.P. Cavafy’s poem, Ithaca, which recounts a journey through many adventures that finally leads to the arrival in the harbor of Ithaca, the poet indicates that one must not rush ashore to claim your prize to find your treasure. The treasure is your journey and it is yours already. The best part of this type of thinking is the reward of self that one receives. Your life will seem to have the worth of your grateful yearnings. It drives you to want more. For me, the collected feathers that were never fashioned into wings; actually were. They began my flight that brought me here on this voyage today.

Wednesday, November 2, 2011

It is 9 am November1, 2011. I am at the Brigham and Women’s Hospital in Boston. I am getting my monthly Benlysta infusion. Benlysta is the first lupus drug approved in over 50 years. I am one of the fortunate patients that is getting it. I am grateful for this drug because of how much it has given back to me. I had noticed the positive effects of it almost from the start.

The first infusion I had was a few days after July 4th…Independence Day…it seemed so appropriate. To me this drug was a promise of a new and freeing life.

It has been a little over five years since I have been bitten by the wolf. In that time I have experienced a lot of trials and tribulations.After the first 3 weeks of being inflicted, I was certain I was going to have a short life, today with the help of this new drug, I feel I have a chance.

Lupus affects everyone so differently. It is a mystery that even the top researchers and doctors can’t seem to figure out. I am reminded of the day on an online support group when a mother wrote into say her 9yr old son was in intensive care. He was just diagnosed and she knew nothing about this disease. Typing from her lap top in his hospital room, she was desperate and wanted to talk to someone…anyone who had been through this. She wanted to be reassured that he was going to be ok. We all responded with positive thoughts and prayers and the encouragement from some that they had had it for 20+ years and have it under control.We checked in on the thread daily. We asked how he was…after a week we received a response…her son was dead. It humbled us all. For those that were old timers…it wasn’t a surprise. For us new timers it was a wake up call to never take anything for granted again. We can joke about the wolf openly…yet we all know he commands respect.

Five years later, what this new drug has done for me is to fight back in a battle that has had out dated ammunition and arms. It has surprised and stopped the wolf in his tracks almost from the first infusion. Five years ago I had a walker…on good days a cane. I was bruised from head to toe and my feet and hands were twice their normal size. Traditional treatments of steroids, Plaquenil and Methotrexate got me under control. The swelling went down the bruising stopped and I could walk…although with a limp. Some may have been satisfied with that and lived their life accordingly. Not me. I wanted more. But more importantly than wanting more for me, I wanted more for all lupus patients. For those who were worse off than I ever was. That is why when I found out about this new drug, I wanted to be a part of it. Benlysta is not for everyone. It doesn’t have the same results for severe Lupus. Believe it or not despite my condition I was still considered a mild case.I on the other hand was the perfect candidate for this treatment and after reading the findings knew it. I not only had SLE (systemic lupus erythematosus) but also DLE (discoid lupus erythematosus) I approached my doctor and he confirmed my candidacy. I was one of two patients he had that fit the criteria and the other one was looking more and more like he wasn’t. In my mind I was the only one to make the stand…to fight for the need. I asked my doctor, “If no one took this drug what would happen to the funding?” He said, “The funding would slow down drastically.” I didn’t need any time to think about it. I immediately said, “Ok, sign me up! Even if it does nothing, it is a way for them to see that.”

Five months later here is what I have experienced. First of all I no longer have joint pain. This is something I have had since the age of eight when I was diagnosed with Juvenile Arthritis. Getting up in the mornings had always been a struggle for me since childhood. My hips and knees would often make cracking noises as if I were slamming two china plates together. Many mornings I would lose my footing and fall on the floor or crash into something in the room. Along with this lack of joint pain I now no longer limp. Can you imagine after all these years being able to have good and graceful posture?I used to be very athletic when I was younger I rode my bike a lot; sometimes sixty miles a day. This was to combat the possibility of damaged joints by building the surrounding muscles. When the wolf bit me; that had to go.Today because of Benlysta, I can ride my bike again.

When the wolf hit I found driving to be a challenge.My perceptions were off. I hit telephone poles while backing up. I would also get confused as to where I was, even in the town I grew up. My strength to shift the car was so weak that I often ground the gears.My family sat me down and decided that for everyone’s safety, not just mine, it was best I stop driving. In my heart I knew they were right, so I did.

Today thanks to Benlysta I am driving again. My brain fog is gone. My reaction time is back .and I have not misjudged where the car is when parking. And I might add I am driving a fifteen passenger van!

The last thing that is very noticeable about the benefits of Benlysta is my rashes. I also suffer from discoid and have approximately five different identified rashes on my body. My nickname among my Lupus friends was always Debra Itchy Highberger, because I was plagued with it the worst. Well I am here to say the rashes have reduced by 40%. The ones on my arms and chest that were always so torturous and inflamed are now just a quiet remnant. The malar rash on my face is almost gone…some days it isn’t even there at all. The discoid seems less active although so far the scars are still noticeable. My hair seems to be growing back as well, and for the first time in my life I am seeing hair on my legs.

All of this tells me that the quality of my life has improved greatly.I am much more active and seem to be slightly less sun sensitive. I can work more hours and no longer need a nap every day. I am now back as a member of society. I know this drug is not for everyone, but for me, it has been a life saver. It is an expensive drug. The average cost when I last checked was just under $40,000 per year. I have insurance, thank goodness, that pays for it. I worry about those who don’t.

But more than that, I am concerned about my friends in the UK that are not able to have the opportunity to even try this drug. According to the NICE (National Institute for Health and Clinical Excellence) the cost effectiveness of this drug does not make it worth it. In other words many in the UK feel this means “a lupus patient will eventually die of this disease so why prolong the inevitable at such an expense.” As a person who has been without health care in the past with meds alone costing well over $2000 per month, and other incidentals such as tests and doctor visits costing roughly$3000 per month; I am all for universal health care. Just because you can’t afford it, doesn’t mean they can choose that you are the one that will die. But as a person with a chronic illness, what I am witnessing globally about such care scares me. Until universal health care understands it is the doctors that should govern a patient’s care and not the job of big business, I am afraid it will be harmful for the chronically ill. We all need to act on this and bring awareness to this fact.

There is, however, something we can all do right now. We need to stand up in this world and be counted together. I first agreed to take this drug because of the possible benefits it will have to furthering research, so that someday they will find a cure for the five million sufferers’ world wide. We need the rest of the world to come on board as well. Please do your part and sign the petition to help others like me.http://online.wsj.com/article/BT-CO-20110930-703836.html(wall street journal article)

Wednesday, August 24, 2011

We are all born with it. Some use it to its full potential …others not so much. For some poor souls they lose it later in life. I am talking about the feeling of desire.
Desire comes in many forms. It can be physical, emotional or spiritual…not necessarily in that order or in exception. As a child our desires are of a physical nature. The desire to eat, sleep and be held; funny that those desires never seem to leave us. Instead we have added desires as we grow. The desire to succeed, for some this means to be the best in everything they do. For others it means to just get along peacefully. But what does it mean to the chronically ill that is faced with daily challenges? Desire and succeeding takes on a whole new meaning, it is mixed in the soup of the desires we are born with.
Before Lupus I had the desire to be successful in business. To be accomplished as an artist, mother and wife. Today my business is 18 years old and despite this bad economy doing ok. I have had shows of my artwork around the globe. And my writing has taken a similar path. My daughter is grown and someone I am very proud of. I have been married for 20 years and although like everyone we have our ups and downs I still picture myself with him until the end. On paper I have fulfilled all my life dreams. You would think that that is where the yearning would stop…but it doesn’t. So I ask myself today and I would like you to do the same…what are your desires? Have you fulfilled all that you want or are there areas in your life that have been left undone?
My desire today is to live a long life. Not too much to ask for. Most people don’t even think about such things. Unfortunately with the lupus patient this is always on the forefront of our minds. We all know that one blood clot could make us lose this battle by the time we hit the floor. The key is to take this desire to live and use it to our benefit and not as an image of doom and gloom. With some of the meds we are forced to take that can be difficult as they seem to push us into that kind of thinking. So I say step back and ask yourself…is the thought of death hindering my course of living, or is it enhancing it? If you find that the thoughts of death enter your mind at least once a day…it is hindering it. When I was first diagnosed I was put on a lot of steroids and antidepressants. This was because the doctors felt that I was taking the news too well. They were sure it was going to hit me emotionally hard at some point. I protested against the antidepressants but they wouldn’t budge; so I took them. I have to say on the first day it gave me a kind of numbing effect. One I wasn’t sure I liked. After a week I didn’t feel it was doing anything. But then after about a month I found myself thinking of death at least 20 times a day and I also lost my desire to move forward in my life. I have to say I was not suicidal. I was basically just existing and waiting for the “end”. I had a suspicion it was the antidepressants because of all those commercials you see on TV. So without telling my doctors I slowly weaned myself off them. And in very quick order my sense of desire came back. I felt somewhat reborn so to speak. I spent hours in my garden. I started painting again. And I started writing.

This got me to thinking that desire is more than a want. It is an important human element that is necessary for our well being and growth. Imagine a life without the propelled energy of desire. It would be merely an existence; and probably a boring one at that. Unfortunately with desire also comes decision making; sometimes in your favor and sometimes not. I have found that desire is the turn in the road in which we choose.
I know what you’re thinking…How does one follow their desires if they are plagued with fatigue? This illness has not only a huge fatigue factor but many also have it accompanied with fibromyalgia. Well you need to do the double “P” push yourself yet pace yourself. The pushing part is emotionally because with fatigue also comes a mental defeatist attitude. You need to push those thoughts aside and move past it. Don’t get caught up in the why me attitude…the pace your self is the physical component. It is a wise lupus patient that understands the reason we have this disease and the fact that our bodies are working two times as hard as the average just to fight the supposed flu it feels we have. So I suggest lists and realistic goals. What must be done is to be a strategist for your day, and the energy level you want to spend.
As I look out my back door I can see the effects of this. My garden is terribly over grown. I have a great desire to go and sit in it and weed. But with the sun where it is today I know I will have to wait until it is cloudy and then put on sunscreen to do it. My desires are simple these days. Long gone are the times of wanting to be a successful and world known artist. Instead I want to feel peace and fulfillment in all do. I don’t have the need to “leave something behind” although as an artist my work will always be out there. Instead I desire to feel accomplished at the end of the day that I did all I could do to the best of my ability, and have the mind to know what is important and what is not. Most importantly I still have this inner dialogue…which is my real desire.

Saturday, July 23, 2011

What are the qualities of man that has the desire to take care of a woman with an illness? Certainly there are some men that find themselves in the position where their loved one comes down with this long after they met. But what about the man that falls in love with a woman who has lupus? The daily grind is medical expenses, endless supplies of pills, and doctor appointment. But there is one area of this illness that is in the forefront of every woman with lupus. It is a subject discussed among themselves behind closed chat doors. It is something they cannot avoid; they see it on a daily basis. It is the one thing and often the first thing the wolf has taken from them. And it is not a subject that can be easily understood with a Google search. It is time this subject be brought to the surface out of the chat rooms and into the living rooms. I am talking about their feeling of being desirable.
In the words of “Snow White”…”Someday my prince will come.” These are words little girls around the world have heard sung for a half century. Over the years talking to woman that I have known in my life that phrase to them was misleading. Life isn’t about being swept off your feet by some handsome stranger. I am sure some have found their “prince”. For everyone the definition is different as to what he looks like and how he acts. But all lupus ladies know…her particular “prince” must be someone very special.
As young girls we are learning who we are. Not yet fully grown we are developing into the women we will become. I believe all women are born with the power of beauty. What is beauty anyway? Is it a way one looks or perhaps acts? According to some studies made it is about the asymmetry of a face. It is even found in the animal kingdom that asymmetry is what will attract one mate to another. It is also in the esthetics of art throughout history that great works of art are defined through the balance of asymmetry. So how does this relate to the beautiful woman? As one gets older we as humans of a higher intelligence than animals realize that beauty is more than just looks. It is a way we carry ourselves…the accomplishments we have made and most importantly it is our heart. To develop into the woman that feels confident, loving, and fulfilled takes years. Some will even say they weren’t fully a woman till they became 40. When life seemed to make sense and the assertiveness of their confidence really takes hold. Unfortunately that is often the age the wolf will show his ugly teeth. When this happened to me I felt jipped. I thought, “Hold on…I have waited years to find this confidence. No one said you could change the rules! And in the process change me completely” But did he?
If media and children’s books have told us as woman, every day that beauty is a physical thing; how do men see it? Certainly there is always their “fantasy woman” We all know what that means and it is not in need of definition. But in reality…it is not reality. Eventually, like women, men come to realize this as well. But what about the lupus lady that has to deal with disfigurement and difficult changes in her appearance? She doesn’t want to be a beauty…she just wants to be accepted. For the woman with lupus without a mate how does she find that special man? She doesn’t…he finds her. He will look past her ailments and through her inadequacies of physical beauty and see her heart. And suddenly in his eyes she is the most beautiful woman he sees. He wants to be near her to feel her energy and love. To marvel at her strength everyday she goes into the battle. He cannot think of being with anyone but her. He will even sometimes wonder if he could be so strong. It is in this way in the lupus ladies world, beauty is redefined.
So how does she get to this point? It can only be obtained in one way…with confidence, and knowing that inside you are still the same person. The wolf can mess with the physical aspects of your heart but he can never take the love that you can have for yourself. Because to love someone else; you must first know it inside. When you walk into a social gathering, hold your head up high and smile. Extend yourself to be in the real world. You need to show people your heart first and they will never see the wolf marks. And that “prince” may actually be there.

Tuesday, June 28, 2011

Is the energy that propels us to reach for things we need as an infant…and want as an adult. Some refer to this as identity.

The Oxford English Dictionary has an abundance of meanings for this word. For the purpose I am using it here it is defined as the following:

“The fact of being who or what a person or thing is”

In other words, who we are in conjunction to, what we are. Who we are can be defined in so many ways. It could be as simple as the achievements one has accomplished or as complicated as the way in which we perceive how we look or act to ourselves and the people around us. Either way we have a picture in our minds as to who we are, what we do and what we look like.

In turn, this affects who we end up associating with and how we carry ourselves. It is difficult to define Identity without also discussing character. A human element that is most difficult to see in ourselves as opposed to others. We know it is there. We hope it is strong and to be admired. It is the strength and originality in a person’s nature.

Most people are happy with their sense of self and identity even if they are unsure about their character. They have adjusted their identity to work for them in their own way. It creates an image in their minds eye that can be called upon at will. They support the self with clothes they wear and jobs they may hold. Over time the self is reinforced and the result is a much better rounded individual. It is the foundation we use to raise a child. It is at these times that the propellant of one’s self can do great things.

But what happens if that self is completely changed by illness? For most Lupus patients, it is often after the self had been fully formed. Where does the old self go? Is it still there hiding among the rashes and hair loss? Does it lurk behind the now awkward gait of our strides? Is it now only a memory of the jobs we used to do?

This was the question that was forefront on my road to understanding this illness. When I am sitting quietly I still see in my mind’s eye that self I have always known. The one with the olive skin, long straight black hair, hazel green eyes with long lashes. I am confident and happy. I have the feeling that I can do anything as long as I believe I can. I am successful in my work and in my relationships. I see myself respected by others, and loved. But most of all I am a woman and every definition that surrounds that word. I am content. But then I look in the mirror, and I don’t know the person looking back at me. She is without hair, has a ruddy complexion, no eye lashes or eyebrows to speak of and has scaring all over her face from discoid. What now defines this woman as such? I want to cry for her when I see her. Some may think it would do me some good…but I don’t…at least not yet.

When my appearance first started to drastically change there was one person who gave me strength. This strength was coming from a most unlikely source. From someone I had never met. From someone we all know. No it wasn’t God. I follow no organized religion. It was from a woman who was in the music industry for many years. A woman who could change her appearance to keep up with the changing times so as to stay on top. She worked very hard at this and it was often discussed in the media. Was it a character she was creating or was it her character that created it? Believe it or not that singer was Madonna.

Only a few years my senior, I watched her as she morphed herself from one generation to the next. Today she is a sophisticated beautiful woman who could put anyone to shame. Never a huge fan of her work, (although I did like some of her songs) I was always fascinated with what she was going to do next. I was drawn to her in that way. Back then I looked to her as a role model in that age was only a number. Little did I know that what I was actually getting at the time was an education that I would need in years to come. No, I didn’t want to look like her. I just wanted and later needed her chameleon attitude. A position I found that would take awhile and courage to obtain. Like most conscious transitions it first appeared to me as thought long before it was acted upon. That thought brought self doubt.

What would people think if I completely changed who I was on the outside? What if I run into someone I know from my past and they don’t recognize me. Will I explain it all to them? Will I feel stupid and therefore reflect that. And then there was the, “Why do I even care what people think?”

Well, I will tell you why…because we do…it is human nature. I knew I had to do something but I didn’t know where to start. So I put it off yet again, until one day I was given the gift of courage from another unlikely source.
I was still teaching at the time that I was dealing with all this. Working with children who can be painfully honest was both a curse and a blessing.

One day a student of mine that was 10 years old came into class and said she had a present for me. Her name was Isabel and in her hand was a hot pink acrylic wig. This young girl and I had always had a special relationship and often I felt she was much older and wiser than her years. We laughed when she pulled it out of the bag, and taking off my hat, I put it on. The class got a kick out of it and I wore it the rest of the day. I remember it was terribly uncomfortable. When parents came into the room I acted like it was my normal hair… to the delight of the children. It was a good time and at the end of the day I went to hand it back to her.

She took me by the hand and led me to the back room. Still holding my hands she looked in my eyes and said, “Debra, it is time.”

I knew what she meant and a lump caught in my throat. She was right. And as most kids her age do …she smiled, skipped out of the room and the magical moment had passed. Although I had known her many years, it was at that time I truly saw her character.

The next day with many tears and yet determination I bought a wig. I first tried on ones that I was familiar with; long straight black hair… I even tried on short black ones. But with the new pinker completion of my face it made me looked all washed out. So I had to go with something completely out of character for me.

I went to a beautician and she showed me how to camouflage my scars. I was also told recently that I needed to cover my face completely because of my discoid. Using a veiling I was better able to protect my skin. Today when I look in the mirror I see a new self. She is blond and exotic looking… her smiling eyes peer back at me under the mystique of the veil… and the first self I had smiled back; because she never left. It was her strength that gave me the courage I needed; the strength of my character to pull it off. And by the way, no one recognized me.

It was like a new beginning, a fresh start; and a sense of control with this often uncontrollable disease.

Although most people know me as a visual artist; my education is actually in child development. I have found over the years for this to be most helpful when I first came down with Multiple Connective Tissue Disease; or MCTD.

Although my own child was grown when I contracted this illness, as a teacher that owns an art school with children from ages 5 through ages 18, it was them I was most concerned about in the appropriateness of explaining this complicated illness. An illness that was difficult for even adults to understand and why it was physically changing who I was.

To make sure I handled this situation correctly I turned to the developmental biologist that has been respected for many generations. His name was Jean Piaget. Piaget had developed many theories on child development from the physical to the intellectual.

Children are not born as “little adults.” It was the first statement I ever read on Piaget philosophy and it is the main statement that should be considered first by anyone who has any association with them. Until approximately age 15, children are not able to posses adult reasoning.

This was not just a theory of Piaget but an observation that was backed up with the understanding of physical brain development. Children under the age of 15, and sometimes 20 for males, do not have the capacity to think like an adult because that part of their brain has not yet developed the capacity. It is with this understanding of the brain development in stages that one can make the appropriate responses to talking to children about long term illness.

Ages 4-7 The Preoperational Period...

We all know that speaking to a toddler about illness would be fruitless. But how do you talk to a child that is over the age of 4? According to Piaget, between the ages of 4-7 they are in the intuitive phase of the preoperational period. Put simply, a child between these ages has an intuitive grasp on logical concepts. They are more socially aware of their surroundings. Rules of a game are not developed; therefore simple dos and don’ts are necessary.

Yet this age also still believes in magic and is relatively unaware of the functioning of daily life. When a child, of this age, has a parent with a chronic illness they will only be somewhat aware of it. To understand just how aware; the parent needs to listen to their questions very intently. A child will only ask a question that he is developmentally able to understand the answer of. This is so important for the parent to understand as it is the building block to all discussion.

On one occasion a 6 year old asked me “Debra why are you walking that way?”…the answer I gave was, “Because my leg hurts.” I am also asked a lot by this age group, “why is your face so red?” I always answer, “Because it doesn’t like the sun.” These simple and to the point answers sufficed for them. I know this because they didn’t have any further questions. When their brain develops further, new questions will arise. Because I can have the same student for ten years; I have personally witnessed this.

Ages 7-12 Period of Concrete Operations...

Concrete Operations is in reference to the child’s development of organized logical thought. They can now understand amounts and multiple classifications of things. Because of this stage their questions will become more intricate. They may for instance ask, “What is it that your face doesn’t like about the sun?”

To which a good answer could be…

” We have two armies that travel in our blood. The first is the red army. It gives us food and nutrients. The second is the white army. It protects us from colds and infections. When the sun touches my skin, the white army that protects my skin thinks that the sun is trying to give me sunburn. So my army is confused and doesn’t know when to stop trying to heal it. It is the army that is really causing my red face.”

The “army” in my body is a good analogy to use with kids. It can explain joint pain, fatigue, and many other symptoms of lupus in a simple and understandable way. I sometimes use it when talking to adults as well.

Ages 12-up Period of Formal Operations...

Formal Operations is a phrase used to describe in the development of a child their ability to understand abstract concepts. They now understand the principles of formal logic and can perceive an action and its possible outcomes. It is the age that children will develop fears of potential situations. It is the age that your child may ask you about your Lupus and death. Because their understanding of the world around them is more concrete, the illness must now have a name. It is ok to call it by what it is. It gives them a visual to place it. Although no one wants to tell their child this illness is going to kill them it is important to be honest with them.

To solve this dilemma I suggest making them a part of the fight in little task type of ways. Say to your child, “If I do what the doctor says and take my medicine I will live a very long life.” It is at this point you can empower your child by asking them to help you in this fight. Suggest to them things they can do around the house to make it easier for you. This will not only give them a feeling of control over the situation but will also teach them empathy and make them feel like they are making a difference.

To conclude; Piaget’s theories are filled with a lot of common sense; it is backed however by scientific studies. What he gave us was peace of mind that we are doing the right thing. Remember, children will only ask what they are developmentally ready to hear the answer to. They want to be a part of the fight against this illness. They need to be reassured that you will be around for years to come.

Time is an abstract concept that is filled with so many different visuals for the individual. As children we use it in the form of anticipation of birthdays, holidays and the idea of what it will be like when we grow up. As an adult it is often a lack there of. The beat of a heart is not unlike the tick of a clock or the swing of a pendulum.

Time is a continuum of contrasts. It is a peek at hopefulness and yet can also be a glimpse of foreboding. Despite being a non tangible thing it is often looked at as its own entity. It is as if it is a living breathing thing that somehow has control over our lives. And yet it has always been something that is just beyond our grasp no matter what our age. At times it is as fleeting as a bird in flight. Other times it is as heavy as a damp day in early spring. What we do with our time also is wrapped up in who we are as people. How we are perceived as an individual. Are we lazy or are we productive. Are we organized or are we a free spirit?

Why are we as humans always so wrapped up in the use of our time spent? After all we don’t even understand the concept of time at our birth. Time isn’t acknowledged until we first realize that our mother has left the room when she put us down for a nap. Time is greatly influenced by how comfortable we are in being alone. The active and fidgety child is often the adult who is trying to accomplish so much. That is not a bad thing, just a different thing. Is how we utilize time really that different then?

Time seems to be something there will always be a reserve for until you are imprisoned in the cell of chronic illness. Then time takes on a whole new persona as complicated as human beings themselves. Yet oddly enough it is still holding its original facet of contrasts. Suddenly time is very limited and yet equally in abundance. The first thing that comes to the mind of the chronically ill is the idea of running out of time. With a possible looming death comes a series of questions. “Will I have the time to do all that I want in my life? Am I going to be able to watch my children grow?” Suddenly life seems so very precious.

And then there is the profusion of time. With Lupus the fatigue is such that you are forced to slow down your life. Many hours can be spent just sitting. Is that a waste of time? If you keep yourself busy so as to not think of such things it virtually feels like a candle burning at both ends. Either way the “busyness” of our lives can be a bit overwhelming. It can give us the feeling of wanting to run from it; even if we can’t.

For me, as a person who has always utilized every second of my life, being forced to slow down was a good thing. Although I have always been very visual, I felt like I saw the world for the first time after I became ill. My perspective of time and what is truly important changed drastically. I used to think, “When I get more time I am going to write a book or crochet that afghan.” Little did I know that this awful disease would give me the wonderful gift of “time."

That intangible object that was always in my head and was just out of reach was now very clear to me. When I first became ill I wanted to tell people about this usual aspect of illness. I tried but mostly they wanted to hear about my physical ailments. I wanted to grab them by the shoulders and shout, “Wait! Listen to me I have been let in on a secret and I want to share it with you!” I wanted to tell them it is ok to just sit…and to just be.

In the process of just being I learned so many things about myself I never would have known otherwise. The first and foremost is that I am always there for me. In the long and isolated hours of the night, when the world was unaware of the pain I was in, I found myself holding my own hand. Literally I would take one hand into the other and stroke it softly to comfort myself. I found this to be of great reassurance to me. It got me through many long and dark nights.

Time is no longer my enemy. As the abstract concept that it has been over the years; time has been measured in many different ways. It was calculated through changes of the sun, the burning of a candle and the ringing of a bell just to name a few. For me it is in the beating of my heart in the still of the night to let me know…I am still here.

Sunday, June 26, 2011

Like the ocean; everything in life has ebb and flow. As a person that has lived on the coast all of my life I have come to realize that like the spirit of the sea life will give and it will take away. This is what the wolf is counting on. The wolf has taken a lot from us. This is something we have known for awhile. For everyone with this disease your “things” may be different. But what we need to do collectively is think of a way to redefine our life and what is important with what we have left, or even a scarier question….what we have yet to obtain. I have looked hard at this since my first visit of the wolf. And just as he is not finished with me, I am not finished with life. I feel it is worth addressing. So instead of saying this is what I no longer have. It is certainly a positive direction to say…now what can I do. Here is the gift he has inadvertently given me:
This dance I have been doing with the wolf has lasted 5 years so far. Before it all came down I was a woman that worked a full time job ran my own school (seven days a week) I painted approximately 10 portraits a year as well as fulfill my obligations with galleries around the globe. I was a wife, raised a child and had taken in homeless children until they graduated from high school or college. My life was very busy…very full…and I felt I had it all. How silly of me to have been so presumptuous.
I was obviously a woman that was ambitious and always wanted to try new things and fill my dance card. What I didn’t understand was what was really important in life. Sure we all read about these importance’s…you may even be reading this right now with that half conscious thought. But until you are faced with a candle burning at both ends when every second is more important than the last you never understand the true meaning of life. Yes I was busy. Some may have even called me successful. But I wasn’t living. I only existed in a whirlwind of energy. Then the wolf stepped into my life and I found myself stopped dead in my tracks. At first I was forced to just sit “still”. Moving was painful so I really didn’t have a choice. When I was still I found that the things I thought made up my life were in fact just things. Later I found life itself held a beauty all its own, irrespective of what one was doing. Being “still” is a wonderful place to be. If you are comfortable being alone like I am it can be the playground in your mind where you went as a child. If you love yourself you always have a friend there. You also have to be brave to go to this place called “still” along with your friends it can also hold your nightmares past monsters and fears. What the wolf has given me is a moment to confront all this...to ask myself what makes me happy and to tackle the terrors in the closet. Interesting the fear was easy to spot…and with time deal with. But the happy part was more abstract. To first find out what makes me happy I had to first examine what was missing. This is not to be confused with what was lost to me, but more what I have never been able to obtain. Once I have this, to then feel my life is complete. After all until your life is complete how will you ever be at peace when it is time to go? This question was my gift from the wolf. These queries are different for everyone. I could tell you mine…but it wouldn’t be yours and therefore really wouldn’t matter. At first it is difficult to just sit and think of these things. You have to admit your weaknesses to yourself. You have to look at all the things in your life that were pushed aside because you figured you would deal with them later. Well guess what? It’s later. The wolf has decided that fate for you. But in time if you give it up to the universe and keep your eyes open you will see your path and the direction to go. Every day we are given a second chance to make it right. To live our lives as someone who is alive. Put your hand over your heart. But instead of making a pledge; feel the life that beats inside you and live.

Choices
What comes to mind when you think of the word choices? Perhaps it’s a meal or a partner or a job. For me it means choosing to live. Others will only think of the word choices when they no longer have any. I have never felt I do not have a choice. It is this stubborn pigheadedness that has taught me to battle the wolf.
For the lupus patient our bodies no longer have rules. Our world inside us is in ciaos. Armies of our immune system are fighting wars without orders; while our bodies lay back and except it. It creates an environment where the meek rarely survive. Although I know the day will at some time come when I am too tired to fight anymore and the wolf will inevitably win. But until that day comes I am my own warrior. We can fight back to some extent. We actually do have choices in the ridged process of keeping ourselves alive. First and foremost we choose the right doctors that understand our needs. We also have choices of medications (not many but some). And then there is a lifestyle we must choose from. Do I still work? What happens if I exercise? Will I hurt myself? Organic not organic….ash the bombardment of information that hits us from all sides is often overwhelming. Sometimes this onslaught of advice is from good intentioned individuals and yet other times from people wanting to take advantage. So how does the lupus patient sort through all these things that are hitting them all at once and take charge? The answer is easy really. Just take the reins…become your own advocate. Set the rules and governor of your own life. There may be a bit of resistance on the part of the people around you. But if you are practical to your own standards and stick to your principles it should prove to be a much more fulfilled life with purpose and excitement. Instead of someone waiting for the wolf to dig the hole. It was this attitude that brought me on a journey that took me half way around the world.
When the wolf knocked at my door five years ago…I unintentionally opened it. And found standing before me a master of disguises and symptoms. An uncontrollable beast that was sure to surprise me at every turn. So how does one tame this beast? Well for me it reminded me of the monster in the closet when I was a child. My mother said to me when I was a frightened little girl, “Stand up to that monster, and tell him you are not playing. Then turn your back on him and ignore him.” That’s exactly what I did when I decided to fly from Boston, Massachusetts in the USA to Brisbane, Australia. I lost my mother to breast cancer when I was in my 20s although she has never seen me sick she is often with me when I need her most.
Several years ago through this magazine and facebook I met an incredible group of woman. They all had lupus and like me they were just trying to reach out to someone who understood what it means to have a chronic illness. I became real close with many of them. We laughed together, cried together and mourned the loss of others who finally laid down their swords to the wolf. Through solidarity we learn to cope. One particular woman Annie Taylor was always there for me. We mostly talked about life we sometimes compared new symptoms when they would arise, but we rarely complained to each other about the situation lupus has put us in. In that way we were good for each other. We were woman first and lupus patients second. We watched out for each other making sure the other was ok and asked each other about results to latest tests. In the course of this developing friendship we found a common bond in tracking down individuals that were trying to take advantage of sick woman. Together with a small group of other woman we would expose them for who they were. Many people began to become dependent on our crusade and it was an empowerment that not only set them free but gave us strength as well.
Then the most amazing thing happened to me about six months ago. I was contacted by a woman who claimed she was my cousin. She not only was my cousin but lived in Australia as well. She was a mere two hours away from Annie. Her name is Sonya. Her grandfather and my grandfather had been brothers. Through circumstances that were out of his control her father had been separated from my side of the family. His name is Jim. We never knew that each other existed. Sonya told her boyfriend Shane that as a gift to her father she wanted to find his family and that is how Shane found me. The first day we made contact on facebook Sonya and I hit it off wonderfully. Despite the time difference we chatted on line that first day for five hours. At the end of this conversation she said in a slow and simple type…”Debra, my father has lupus.” I stood there looking at the letters on my chat screen. I didn’t know how to respond. I until this point could not find my genetic link to this disease. And of course neither could he. Half way across the world a tear rolled down my cheek. I suddenly felt for certain that answering the door to the wolf was not in fact anything I did but was something that was destined to be. I had never met Jim before. But our bodies knew. Deep down in the DNA markers that claim us; Jim and I was a match: a lupus match.
Over a short period of time, Sonya and I became close. We talked every day sometimes twice a day. I introduced her to Annie Taylor and told her about the different lupus organizations in Australia. I told her that I wanted to go there and see her Jim Annie and Geoff Thomas (the amazing man that has started this magazine). I said I wanted to go to the Lupus Association Queensland’s a
Annual High Tea and introduce everyone to my uncle Jim. Sonya was the one who made me believe it was possible. And then a friend I went to high school with said out of the blue to me not knowing I had these conversations…”Debra you need to go to Australia.” That was it…for me it was a sign. But where was I going to get the money for round trip tickets to Australia. The event was less than a month away. The next morning Sonya said to me..”Debra this is meant to be , you have to have some way you can get yourself here. And then it dawned on me. My friend Tom had asked me about a year ago to do a portrait of his girlfriend Alex. I know if I were to ask him he would pay me now so that I could pay for part of the ticket. And when I get back I will do the painting. He already had many paintings of mine he knew I was good for it. When I sent him the email I got a reply back in less than an hour …it simply said, “You deserve this…I sent you a check for the full ticket…enjoy, Tom.” My aunt Tish was there when that happened. She was intrigued by this whole chain of events. Although she didn’t recall Jim she did recall the stories that he existed. Tish then became my advocate to make sure I had what I needed to take this incredible trip, and to do it safely.
Everyone around me thought I was crazy. Especially since I insisted I go alone…In some ways it was “my walkabout” I had to prove to myself and the wolf that I had a choice. My husband was supportive right from the start. After knowing me for over 30 years he knew there was little he could do to stop me. My daughter on the other hand was very hesitant. At the age of 19 when the wolf knocked at our door looking for her mother she found herself thrown into an early adulthood. Now five years later she feels she is the parent. It is her own personal way of taking charge of this beast. So I often let her take over, but not this time. This adventure was going to be mine. People’s reactions to this trip were often filled with surprised and shocking faces. Many came right out and said I don’t think you should go. What if you collapse just during the journey? You have been hospitalized four times in the past years for heart related issues. What if that happens over the Pacific Ocean where there are no emergency rooms to attend to you. My response was simple and very honest…”Then it was meant to be.” My doctor was an interesting reaction. In an email he wrote “GREAT! Good for you!” It was the most reassuring response I had received so far.
The flight was difficult I’ll admit. For a 22 hour plane ride my biggest fear was DVT (deep vein thrombosis; a blood clotting disorder that can cause a heart attack, stroke and even death). So I naturally spoke to my doctor ahead of time and he advised me what to do. I had been on aspirin therapy all ready so he wanted me to wear the proper socks, do the exercises on the plane, and walk every 1-2 hours, which I did. I was very prepared for all the physical aspects and limitations I would have. What I didn’t expect was the psychological toile it would have on me.
At midnight after a six hour flight, where I had been doing all that was suppose to in the form of exercise and hydration from Boston to Los Angeles I found myself alone and exhausted. With no one to help me with my bags I was walked three blocks through Lax to get to the international terminal. The weather in Los Angeles hit me like an oven door opening. The fatigue of having traveled for that many hours was wearing on me. I could hear the wolf shuffling behind me laughing in my ear…”You thought you could ignore me… to outsmart me …well you didn’t …I will always be close behind you!” I could feel his hot breath trickling sweat down the back of my neck. I wanted to cry. I didn’t have that luxury. I knew I couldn’t waist time or I would miss my connecting flight. I had to press on. What I was feeling in my body was equally scary. My heart was pounding and skipping beats. I been hydrating myself constantly so I knew I had enough fluid but with the sweat now poring off me I was no longer sure. Maybe it was anxiety. Something I have not had issues with before. Moisture was streaming down around my face from under my wig. The sunscreen was trickling down as well and stinging my eyes. Every joint in my body ached. And it also didn’t help that people were plowing through me nearly knocking me down in their own haste to grab a connecting flight. Then it struck me…My mother’s words began whispering in my other ear...as she pushed the wolf off me she said, “Debra tell him you don’t want to play …and then ignore him” My heart began to be filled with strength. There was a determination in my step that hadn’t been there. I was using the adrenaline that was pumping through my veins as something to help me and not something to be afraid of. When I arrived at terminal four at the international section of the airport I was hot and tired but also angry and unwavering. When I walked into the waiting area I was hit by another obstacle. There were no seats and the place was packed. Here I was all disheveled walking with a cane and the flare on my face turning a lovely shade of purple. It was my anger that gave me the courage to go up to a young man in his 20s and insist he let me have the seat that was occupying his luggage. I must have looked like a crazy person because he took one look at me and immediately obeyed.
When I boarded the plane bound for Brisbane I was so worked up. I knew this was an over tiredness that I had to get a handle on. I couldn’t allow this to get a hold of me. With a fourteen hour flight ahead of me I needed to calm the skips that were pounding my chest. I grabbed my water bottle and smiled consciously at my mother who now decided to sit next to me. I forced myself to drink and ate a protein bar I had in my purse. I then took a pillow that was on my seat and tried my best to ignore all the things around me and sleep. I must have looked a train wreck because the man next to me handed me his pillow and said, “Here it might be easier with two”. There were three screaming babies under the age of two all around me. Every time I started to drop off to sleep my body would jump awake with a start at their outburst. At one point I looked up to see the wolf leaning up against the galley wall just past the curtain. He was smiling and laughing at me…he said, “If you need to leave and abort this plane you better do it now.”
My mother whispered in my ear “Just close your eyes Debra, all you need is sleep.” The pain in my joints also played another important role in this mission. Every 1-2 hours my hips hurt so bad it forced me to get up and walk. On the first stretch of the walk I would see the wolf down at the end sitting in a seat and reading a magazine. He glanced up at me with an evil look. I would walk past him and turn to head back… at the other end was Mom waiting for me at my own seat. She had a look of pride on her face. It was a calming feeling knowing she was with me. I would then plop back down and sleep another 1-2 hours. My mother appeared again at dinner time. This time she took over the body of the man sitting next to me. He touched my shoulder gently to waken me and said I think you should eat something. Mind you he knew nothing of my condition we had not spoken other than him giving me the pillow (which I am now convinced were also my mothers doing). He could see by my face that I was in a bad way and out of the goodness of his heart he kept an eye on me. I was not hungry and was so tired that had he not waken me I would have slept through it; an act that would have resulted in a very bad outcome.
I arrived in Brisbane wrinkled and disheveled. But my journey was not yet over , I still had to get myself through customs and security. After a half hour of waiting in those lines I walked through the glass door and was met by Sonya, Shane and Annie. I was so happy I threw my arms around them and Annie handed me a cup of coffee. I wanted to cry with the feeling of pride and accomplishment that was racing through my body. I wanted to tell them what this actually means to me the difficulty I had and how I got through it. Instead all I said was…”I did it…all by myself.” They laughed and hugged me. Looking across the room while I was still in their embrace I saw a woman smiling over at us she nodded in my direction as she opened the door and left … it was my mother. Thank you Mom…I couldn’t have done it without you.

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About Me

I have owned an art school since 1995. I write for The Lupus Magazine. I am a portrait,landscape, and fine art painter. My artwork has been shown both nationally and internationally. I make one hell of a chicken pot pie :)